It’s been a busy few weeks. I most definitely have GVHD and my skin is a mess. I keep staring at my fingers and toes as they are really funny looking.
Last week I started my first ECP treatment at Rotherham General Hospital. Me and Mummy travelled up on Wednesday and I had to have some blood taken for a cross match ready for me to start treatment on Thursday morning. I have a fancy new line now called a hemo-cath and it has two ports on it.
All loaded up for 3 days in Rotherham
I also saw Dr Alfred and him and Dr Hartley had a chat on the phone and decided to increase my steroids as my skin had got worse.
Afterwards we went for a walk around Meadowhall which is a big shopping centre nearby. Daddy wasn’t surprised when Mummy said she’d been shopping, he says she loves shopping!
While we’re in Rotherham we stay at a Premier Inn near the hospital and the nice people there let Mummy put my medicines and feed in the fridge so they could be kept cold. I have my own cot there and it’s noisy when I kick it so I get to annoy Mummy all night!
On Wednesday I had my first treatment. It was really easy, I just sat and played while Maggie and Cherie hooked me up to the big special machine. It takes a few hours so I had a little sleep too!
Me having ECP, and a snooze
Afterwards me and Mummy went for a big wall and I had a sleep in the park. My grandad doesn’t live too far away so me and Mummy went there for dinner…well I just had my feed because I’m still too silly with food!
On Friday I had another session before me and Mummy hit the M1 before taking a detour via Birmingham Children’s Hospital to see Dr Hartley. Because my steroids have been increased she needs to keep a close eye on my blood pressure. While we were there we popped in to Ward 2 to see my old friend Amanda and the other lovely nurses.
The weather has been really nice but skin is super sensitive so I have to stay out the sun. On Sunday me, Mummy, Daddy and Ella went to a big park. I am in the pushchair hiding from the sun!
I think my new medicines are working because I don’t feel as grumpy and have been a bit more fun to be around…which is good as it’s Daddy’s turn in Rotherham today and tomorrow.
That’s all for now
Today we should have probably woken up to a little boy who shouts to tell us he’s awake and then toddles round while we prepare breakfast and who then proceeds to get weetabix all over his face.
Instead we woke up, said “he’s being sick” and rushed into Oliver’s room and quickly sat him up so he could have his morning vomit. Still bleary eyed we then realised his stoma bag had leaked too so the morning started with cleaning up poo and sick….another standard morning in the Jones house.
When Oliver was born premature we naively thought a few weeks on NICU and we’d have our baby home and that’d be that. And for 7 weeks that seemed likely until a year ago today when Oliver contracted NEC or necrotising enterocolitis which was the day our lives undoubtedly changed forever.
I will never forget the phone call from UHCW and arriving there to see Oliver’s body shaking as he’d been put on an oscillating ventilator. I’ll never forget being told to say goodbye and being told in the future this will be treatable, or breaking down hysterically in the middle of the carpark, or watching the beautiful sunset as we drove up the M69 to Leicester Royal Infirmary expecting Oliver to not have survived the journey. I’ll never forget the kindness of Anu and Jemma who looked after us and Andy Currie the consultant who stayed all night until Oliver was out of theatre, his shirt all creased after he’d had a nap in his office.
What we didn’t know was how much our lives would be turned upside down by the horrible condition that is NEC. Most people have never heard if it and even specialists don’t know what causes it or how to detect it sooner. Never in a million years did we think Oliver would end up needing a transplant and now he has GVHD. His donor organs are attacking him as they know they’re foreign and his poor skin is sufering. Only a month after losing his broviac line he’ll now have a new one on Friday and next week he’ll start his first 2 day treatment in Rotherham….over one hundred miles from home.
Oliver's cracked fingers
People say we must be so happy to have Oliver home now he’s better…but it’s not that simple. We’re carers more than we are a Mummy and Daddy. After we’ve cleared up the first sick of the day, its time to draw up morning medicines, and make up feed. Just a quick trip out the house involves attaching 2 feed pumps to the pushchair and then enduring the staring or pitiful looks when you’re out.
A day's medicines
I can’t help but think that people who say “I wouldn’t change it for the world” are liars. If we could have a “normal” baby, we would. But just when you think you can’t go on Oliver will call your name and smile and you can’t be cross.
I’ve had a good couple of weeks and thankfully, for Mummy and Daddy, haven’t pulled my NJ tube out again.
Sitting like a big boy today
About a month ago I started getting a rash which Dr Hartley was a bit worried about and my steroids were increased and it went away. My blood pressure has gone a bit high though so my steroids have been reduced a bit and my rash is back with a vengeance. Dr Hartley thinks its GVHD which is graft vs host disease which is my donor organs attacking me. Naughty organs! I’m going to have a skin biopsy soon and am waiting for a referral at a specialist centre. I’m probably going to have a treatment called ECP which is where I have my blood taken through dialysis and the white cells zapped somehow. The bad side is I’ll need a new line for this and I’ll probably have to go to Rotherham almost every week for a year! Just when Mummy and Daddy thought most of the travelling was behind them!
Otherwise I’ve been doing well. I’m on a new special feed as my potassium levels were high and I was getting a bit too chunky too. Daddy says I need to start crawling and lose some chub. Mummy convinced the hospital to let me start having some feed down my NG so I can hopefully get rid of my NJ tube so I’m now having 5ml an hour down my NG which I’m tolerating fine..its just a pain having two pumps and tubes attached! I have a sippy cup too that I love, although I tend to shake water down myself! This week I’ve tried some jelly which I liked, and Mummy tried to make me have some avocado but I spat it out. Why eat when I get fed through a tube?! Mummy and Daddy keep telling me I need to…and then people won’t stare at my tubes either.
I’m sitting up lots more now and don’t mind tummy time too much either and love Ella coming to play with me as she’s really silly.
Having cuddles with my big sis
At home it’s been a bit mad as Mummy and Daddy are having some work done to the new house. The plumbers think I’m funny because I can sleep even when they’re making lots of noise! I’ve told Mummy and Daddy to keep my artex ceiling as I like looking at it and talking to it.
Speaking of talking, I’m being very cheeky at the moment and only say “Dadda” now. Mummy tries to get me to say “Mamma” but I just say “Dadda” back to her and laugh at her!!
Right, I’m off for a walk in the sunshine now!